Portsmouth mums in London campaigning for cystic fibrosis drug to be on NHS

Gemma Weir and Michelle Frank, from Paulsgrove, are delivering a petition to 10 Downing Street calling for treatment drug Orkambi to be free for people with cystic fibrosis.

Currently, it is only available privately after the price, of £104,000 per year per patient, was deemed too expensive.

Both Gemma and Michelle’s daughters have the condition which causes a thick mucus to clog up the lungs and digestive system.

A few weeks ago the pair set up a petition and in less than two weeks it reached the 100,000 signatures needed to be debated in parliament.

Today, Gemma and Michelle are delivering the petition to Downing Street and will be taking part in a round table discussion hosted by Dudley MP Ian Austin.

There will also be a protest outside Westminster.

Orkambi will be discussed in parliament on March 19.

Speaking previously about the difference Orkambi would make to her six-year-old daughter Emma, Michelle said: ‘Orkambi won’t cure cystic fibrosis but it will halt it.

‘It means my daughter will be able to live a practically normal life and it won’t be case of maybe she will get to be 30 but that she will get to 30.

‘It is life-changing and will help people with cystic fibrosis have a normal life span.’